I have been trying to stay chronological with my posts, however I have formed a sort of writers block as of late.. And by that I mean nearly two months now. My thoughts seem to always reroute itself back to one thought.. The truth I can’t escape from. So here it goes.. A glimpse into my head space…

We all go through different experiences in life, and through the experiences no matter how good or bad we build our subconscious defense mechanisms; Denial, displacement, projection, etc.. Mine has always been repression. It keeps me safe, in enables me to talk about a topic endlessly without an emotional connection and it has allowed my mind to avoid the fog that came with an eventful upbringing. I bury things momentarily, I cut the emotional ties and dive myself into understanding why it happened or what I have/could learn from it, eventually holding no animosity towards any particular event. I don’t pretend that it doesn’t exist so to speak (making it denial), I just deal with it on my terms when I am ready to.

I have lost my ability to utilize my defense mechanism. My shield that has kept me safe.

I feel defenseless. Unprotected. I feel trapped in my own thoughts, forced every day to relive not only that moment on Feb,1, 2018, but what is still to come. That moment my lifetime with my girl wasn’t as long as I had planned and hoped for… My ability to repress depends on not putting myself into a situation similar to what happened OR changing my thoughts on it to being less negative. It is understanding the purpose of that experience, what can be learned from it or how I grew as a person from going through that experience. Flip the narrative.

For the first couple of weeks after the diagnosis, I had no problems with that. I was able to dive into the blog, into social media and the news, interviews, research…

I felt capable. Driven. Unstoppable.

A few days into starting the Dexamethasone (intense corticosteroid to keep swelling in the brain down) Janaya started complaining of little things such as fatigue or pain when she laughed or had abdominal cramps. It wasn’t until around Valentines Day when the weight gain started becoming noticeable (puffy cheeks, bloated belly) that my natural defense had begun to fail me. They warned us in the beginning that the steroids and radiation would cause weight gain, this being the ONLY thing Janaya reacted to emotionally when we sat down with the Child Life Specialist to explain to her what she had. It was literally the only thing she cried about. She has always been petite, so finding out she would be gaining a potentially substantial amount of weight, on top of everything else, was unbearable. And boy, did the weight come fast…

Within three weeks of starting the meds and being diagnosed, she had put on a whopping 20lbs. To date (May.9) she has gained 40lbs total, seeming to be hanging around that mark for the last month and a half or so. Not only that, one month in the hair started to come out at the site of radiation. It started with little bits of hair coming out when I brushed it or bathed her however mid March it got worse. Bigger chunks started coming out, roughly 1cm², which only seemed to stop approximately 2 weeks after radiation completed on March 26. It left behind a strip in the middle and a little row of hair at the bottom.

While all this is going on, Janaya had absolutely no interest in anything. She seemed sad, mad and in a haze all the time and all she wanted to do was watch Roblox videos on YouTube in bed. She didn’t want to see friends, family, favorite teachers, etc… She didn’t even want to see me most of the time. She just wanted alone time. So I honored that for her, gave her space and disintegrated mentally feeling extremely alone (as much as my fiance tried being there for me, I just felt empty…).

Leading around to the point of this post… I couldn’t repress Janaya’s diagnosis. I couldn’t run from my thoughts, I couldn’t bury it until I was ready to deal with it or sort through my emotions when the time was right. My bestfriend, my baby, was falling apart in front of me both emotionally and physically and there was nothing I could do to stop it. I couldn’t make her smile, which I have NEVER had problems doing in the past. I couldn’t make her feel better, which I typically have ALWAYS been able to do somehow. My ‘mommy powers’ weren’t working no matter how hard I tried and I didn’t (and still don’t) know how to process that. I know my girl better than literally anyone else on this planet, we have been to hell and back together, numerous hospital stays, the bad times and the good. I have always been her haven. And just as I feel that I’m losing her, I couldn’t imagine how she feels watching her mother try and fail, not understanding why… Not being able to understand any of it. As her mother, not being able to help her comprehend what her life has turned into..

I have lost my ability to protect myself. The swelling and hair loss crept in like a cold breeze and swept away any sense I had of how to cope… And now I am left in the whirlwind of confusion it left in its wake. The battle has barely begun, and my cracks have already begun to form.

♦ ♦ ♦ ♦ ♦

This post has been an extremely difficult one for me. I have been typing it up since the end of March and while this isn’t necessarily where my mind frame is at the current moment (Janaya is coming back to me slowly, allowing myself the ability to process a bit), it is hard putting myself back in that place and feeling that out-of-body experience. I lost myself for a few weeks, and without the support system I have I am not sure how I would have gotten out of it. I guess it was a trial run for what’s to come…

Until next time. Thank you for following along on our Journey.

Amanda

** Date the post was written was changed to allow posts to show in order **